bladder cancer

12 years 7 months ago #38825 by DougG
Replied by DougG on topic bladder cancer
John,

Where are you located? Several on here can help you by recommending the best place/doctor to go to for a second opinion that is closest to you.

Best wishes,
Anita

Anita
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12 years 7 months ago #38823 by Nix
Replied by Nix on topic bladder cancer
Hi John,
Please listen to Patricia! The first and most important part of your treatment is your doctor. Find one that has treated a LOT of Bladder Cancer. Your Uro is wrong about the FISH test. I have one with every cysto, and after two years of sucessful treatment, they come back "clear" I think the fact that your doctor said this, shows he does not treat too many cases of Bladder Cancer.
There is a wealth of information on this site, to help you through this journey.
Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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12 years 7 months ago #38820 by Patricia
Replied by Patricia on topic bladder cancer
John,
you really need to put your faith in a Urologist that deals with a ton of bladder cancer and that person is going to be found at a major cancer center, urological center or university center.
This is not your ordinary cancer and it requires expert pathologists as well as urologists to keep on top of it. If you tell us where you are located we can refer you to one of the best.
Here's a paper on various tests for bladder cancer and as you can see there are many and there are many false positives and many false negatives and not all urologists especially those in a private practice are going to do the relevant tests. And many uro's do not see the tumors or the hidden ones..white light cystoscopy is not the best even if you are the best.
www.ncbi.nlm.nih.gov/pmc/articles/PMC2483317/
please let us help you and your sister navigate this for you and keep you healthy.
pat

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12 years 7 months ago #38818 by johnm126
Replied by johnm126 on topic bladder cancer
Thanks Sara and doug for replies,When I was diagnosed I didnt really ask many questions,I put faith in the doctor and my sister has been a rn for over 30 years and she is a blessing.I really dont know a number for it he just explained we caught it early and as I said before when he did biospy he thought it would come back negitive because he never really saw anything.I had 6 treatments They filled my bladder and I had to keep it in for 2 hrs afterwards.What caught it was I went through a bout with urinary infection and this time I could not get rid of it so after 3 months of that The doctor told him I was going to have to see a specialist He did the fish test and when it came back positive then the biopsy.I was pretty well satisfied with first doctor he did a scope and fish test every 3 months and never mentioned that it would come back positive once I had cancer even after treatments.The second doctor does a scope and a test Im not sure what test but it shows results right away.When I asked him about fish test he told me he doesnt do it after the fact for that reason that it would show positive and then we would just have to have a biopsy.I have had 3 check up now and they say it looks good in there and the fish test did come back with abnormal cells but no cancer cells.Im sure after hearing from some of you I will probably need to talk to my doctor and get more information.At the time I dint want to know I just put faith in him and my sister.Doug if your talking taking a biopsy ever time they do a scope the answer is no ,they just scope and look around.I did ask first doctor if they did a biopsy with each scope and he said no that would be to painful to do without putting u to sleep.And do they still check you every 6 months after this long the doctor told me every 3 months for a year then every 6 months for a year then every yr after that.Thanks to both of you and for anything you can tell me.

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12 years 7 months ago #38810 by DougG
Replied by DougG on topic bladder cancer
John,

Welcome to the forum. I was diagnosed in May 2001 with BC. I have had cytology tests every time that I was scoped (every 3 months, now up to every 6 months). My last cytology report came back atypical and so they did a FISH test on my urine. This was the first FISH test that I ever had, BUT it came back negative...so you are right -- it will NOT show positive forever after you have had bladder cancer. Perhaps your doctor is not doing the FISH test because it is so expensive ($2500, I think they told me). Is your doctor doing a standard cytology test each time you are in for a check up? Is there another local doctor you could choose? It sounds like your current doctor is not the doctor for you. I am 54, so we are close in age.

Doug

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12 years 7 months ago #38809 by sara.anne
Replied by sara.anne on topic bladder cancer
Welcome to our site...think you will find a lot of answers to some of your questions in the information parts of the site as well as here on the forum.

Got a few questions for you. You said that your cancer was "low grade." Did your urologist give you any numbers to go with that description? That would tell us a little more about what you are dealing with.

You said you sent through the "treatments." What were the treatments? BCG? If so, how many did you have? What symptoms caused you to get a diagnosis of bladder cancer? Where are you located?

I am sure that other members of the group will be chiming in to answer some of your questions about the FISH test results.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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